In 2007, supported by an extraordinary team of family, friends, and medical staff, I stomped the snot out of a nasty cancer that was on its way to killing me. I've since learned that the way I did it has a lot in common with the advice of the "e-patients" movement, so I've changed my blogger name from Patient Dave to e-Patient Dave.

Sunday, August 24, 2008

I'm writing this in March 2009, but to keep the thread together I'll back-date it to 8/24/08, just after the previous post in this series.

In the previous post I covered the first sections of Chapter 7. Continuing:

The e-patient-receptive clinician: "When patients [can] collaborate with a non-paternalistic clinician, asking questions in their own way and communicating via e-mail when needed, actual consultation times typically do not increase. Patients are more satisfied and feel that they have spent more time with their doctors – even though, in some cases, they may spend less time interacting face-to-face." (Emphasis added.)

I know this from first-hand experience: when I've communicated with my providers before a meeting, so the agenda is pre-set, I always leave the meeting satisfied. And it gives them a chance to be more prepared.)

"Kate Lorig and her colleagues at the Stanford Patient Education Research Center were the first to identify and study the expert patient. They found that, compared with other patients, expert patients did a much better job of managing their diseases-improving their health status, coping more effectively with fatigue, remaining less dependent on professional care, and managing the many other challenges of their chronic condition."

"Anecdotal impressions so far suggest a level of commitment and enthusiasm from patients, healthcare professionals, and managers that will carry the management of chronic disease into a new era of optimism and opportunity." Liam Donaldson, chief medical officer of Britain's National Health Service, commenting on the NHS's Expert Patient Program.

How e-Patients Can Help Healthcare: "Autonomous patients will educate themselves about their medical conditions and will manage more of their own medical care. In so doing, they will operate at a higher level:

setting and implementing their own healthcare agendas whenever possible;

diagnosing and treating more of their own medical conditions;

obtaining more tests and treatments on their own;

storing, organizing, and updating their medical information in more comprehensive and useful ways;

preparing themselves for their interactions with medical professionals."

Conclusions: "As Coulter warns, clinicians must accept patients as partners. If they do not, the healthcare system will be vulnerable to a widespread loss of confidence. But if they do, there is the potential for more patients to help themselves to the health care that they need."

I think it's fitting to end by repeating what I said at the start of this chapter:

In some ways, it all comes down to who can make informed decisions, and "informed" comes down to who's got access to the information. That's what this chapter is about: the Internet has fundamentally changed who can get at information. (Hence, in the chapter title, "the reconfiguration of medical knowledge.")

The Internet also adds something that was never before possible: today we (patients in need) can talk to peers around the world whom we'd never have met, to share experiences and knowledge. In a complete inversion of the previous "knowledge/power pyramid," this sometimes means we the patients have access to knowledge that our doctors don't!

Think about that. Really think about it. I don't want to say "this changes everything," but it sure dynamites conventional wisdom about where to go if you want your life saved. Really think about that.

Plus, our ability to get at information and our ability to share it (and find new information from other patients) gives us an autonomy we've never had, forever freeing us from dependence on a single source of knowledge.

Ironically, this also reduces the historical burden on the physician to "know everything." And that completes the profound reconfiguration of medical knowledge.

I know I've read something that alters my view when I can return to the beginning and find that it has a whole new meaning. Here's the quote that opened Chapter 1 of this white paper:

[People] are suddenly nomadic gatherers of knowledge...informed as never before...involved in the social process as never before...[as] we extend our central nervous system globally..." --Marshall McLuhan, 1964